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Believe Half of What You See and None of What You Hear (or Read): Navigating Dementias Information Online

We humans are a very gullible bunch. We are also capable of the most incredible leaps of faith in tying the most disparate and thinly-threaded information together while we routinely disbelieve proven facts and credible information backed by proof, analysis, and critical thinking.

Why is that we go to the outermost reaches of implausible information to build our internal knowledgebases on instead of doing real, credible – yes, it takes time, it takes effort, it takes analysis, it takes critical thinking, it takes patience, and it takes commitment – research to understand the various kinds of dementa (Alzheimer’s is just one kind of dementia), to understand what the scientific process – and effects are – and to understand how we as caregivers can love and support our loved ones with honor and dignity?

Going Gentle Into That Good Night is a comprehensive resource for factual, well-researched, and practical information on dementias. The information is free for everybody. Yet routinely I see the most outlandish and untrue information on dementias on social media.

Silver bullet cures (there are no cures). Unproven links to other diseases based on an infinitesimally small test sample (no real scientist or pathologist would hang their careers on samplings this small to announce a finding). Claims that this or that “natural” thing will reverse or improve a brain already neurologically compromised.

It sounds wonderful. But it is misinformation, disinformation, and, in many cases, completely dishonest.

For a lot of these things, the motive is to get us to spend a lot of our hard-earned money on a pipe dream while the people getting rich on our backs are laughing all the way to the bank. For the other things, it is simply a matter of hacks or inferior scientists, doctors, etc. trying to get their 15 minutes of fame.

All at our expense and at the expense of our loved ones with dementias and Alzheimer’s Disease. Not only is there a monetary expense, but there is also an emotional expense, a psychological expense, and a physical expense.

All of these areas can be significantly drained and irreparably damaged in the process.

An example of this insanity in the pre-information age was in the widespread usage of mercury as a cure-all during the 18th and 19th centuries. Mercury, it turns out, is incredibly toxic and rapidly leads to premature death (Louisa May Alcott, author of Little Women, died an early death from mercury, which was prescribed for her various physical ailments, poisoning).

It is easy to think, “Duh!” now, but the same kind of misinformation, disinformation, and outright lies are even more rampant and accessible today because of technology.

If you want to believe something – even something unproven, outrageous, dead wrong, and possibly life-threatening – the internet offers you the backup and the “proof” you need to justify whatever it is you want to believe.

The internet is full of hacks. It is full of wannabes. It is full of misinformation, disinformation, and lies. About dementias. And about everything else.

Do not believe anything that you cannot prove yourself beyond a shadow of a doubt. Do not trust anything just because it looks like somebody credible (a doctor, perhaps) said it.

I implore you not to check your critical thinking, your BS meter (we all have one, I hope), your logic, your reason, and your common sense at the door when you enter the wild and wacky world of the internet.

Here’s the most important thing to remember. Most disinformation, misinformation, and outright lies have a tiny grain of truth in them. That is always the hook. Always.

However one grain of truth surrounded by countless grains of not truth still makes the information as a whole untrue. Do not fall for the hook because once you do, then you are moving as far and as fast away from the truth as possible.

An example related directly to dementias is the supposition that shows up over and over that Lyme Disease is the cause of Alzheimer’s Disease.

This is sensational disinformation and misinformation. A healthy dose of common sense with thoughtful, careful, and diligent research, analysis, and critical thinking would prove or disprove this bombshell claim.

Common sense brings the “5 in 5 brains” into focus. Five brains out of the millions of people who have had and who have some form of dementia is not a credible sampling of the population affected.

I could very easily go out and find five random people who have the same auburn hair that I do and declare that I have turned genetics upside down and found that auburn hair is a dominant trait (it is recessive).

This is common sense and logic and we must bring these to the table when we’re looking at any and all information. Applied to this graphic, we should automatically mistrust this information.

But that’s not enough to prove it wrong. We actually have to go and do some research. This microstudy was done by McDonald in 2006. The opening statement of the abstract tells us key information through which to view McDonald’s microstudy: “Here is hypothesized a truly revolutionary notion…”

A hypothesis is not fact. It is a theory, a guess, an imagination that remains to be proved or disproved. The infographic, then, presents the information as already being proved, which is misinformation.

That the study was done almost 10 years ago also raises the eyebrows of doubt because much has been done in the research and causes of dementias and Alzheimer’s Disease in those intervening years.

In fact, with some research on the possible link between Lyme Disease and Alzheimer’s Disease, we find a study from 2014 (eight years after McDonald’s microstudy) that definitively repudiates the existence of a link between the two diseases.

To not verify and prove anything and everything is not only lazy, but in many ways, ignorant. Why would we not want to get all the facts instead of trying to support some pet theory that we believe? I don’t understand that.

Too few of us, to our discredit, actually go through this process and that is what I am begging each of you and imploring each of you to do. Know why you know what you know. Know why you believe what you believe. Know why you do what you do.

Ever. If not for ourselves, for our loved ones. They’ve entrusted their lives to us. We owe it to them to be rigorously honest and apply that everywhere in our lives and to not fall for gimmicks, misinformation, disinformation, and outright lies.

The cost of not doing this is high to everyone.

To us in terms of our character and our credibility (if we perpetuate disinformation, misinformation, and erroneous information, then we are leading people astray and away from the truth).

To our loved ones in terms of their care and their lives (we can cause much harm and much suffering by believing things that are not true and not proven).

A huge part of true love is the continuous hard work it requires us to put into living it, being it, showing it consistently and continually.

9 thoughts on “Believe Half of What You See and None of What You Hear (or Read): Navigating Dementias Information Online”

Very good post. I doubt they ever find a cure for Alzheimer’s/dementias because the brain is so complicated. I keep telling caregivers of those with these diseases to read, read, read and learn about the disease their loved one is dealing with everyday.. I am constantly reading books of those who are researching dementia or those who are living with the disease.. I question everything and try my best to find the truth. The internet is notorious at misguiding people with untrue information. Everyone needs to be extremely careful. You are really doing a great job with this blog. A+

Thank you, Liz, for your comments. I believe part of my paying it forward is to use the professional knowledge that God has blessed me with as well as the fight for truth, when there is so little of it in our world today, to educate, exhort, and remind us all that there’s a lot of junk out there and we have to be constantly aware and constantly testing and proving all things.

You deserve a standing ovation for this piece. I have been diagnosed with Lyme Disease for about a month. I was lucky enough to have been diagnosed not long after I started having symptoms and referred to a doctor who added the test to the list of things to look for based on my symptoms and what my liver etc was telling us.
There is so much bad information on the internet and even in books by people who feed on fears and not on facts. People who are afraid and at their most vulnerable don’t make wise decisions for themselves. You are so right that “medical professionals” will bank on people who will spend whatever they can and can’t afford based on this bad information.
In my case I had, what I suspected, to be a quack “lyme literate” doctor give me some advice and had surprisingly open availability to make appointments. He also wanted $400 up front and didn’t want to deal with my insurance company. It was a lot of things about him that sent up the red flags.
Another was all the new agey and natural remedies that everyone seems to be trying. My first thought was wow, all this junk these “doctors” are putting you on is probably why you feel like garbage all the time. Some of the things that I saw read like witches spells in children’s books. I’ve even joked that “eye of newt” is probably hard to come by..
I can agree with some that there are quite a few doctors that should not be doctors that probably don’t give the best care and advise that they could be. There are ways to handle professionals like that.
Even with that said, I prefer care based on science rather than crystals, purple lights and essential oils. You know what I am saying.
Anyway, I don’t want to ramble on. I just wanted to write a few lines to tel you that I totally applaud this piece and I hope that enough people see it so that they can reason with themselves and/or their loved ones.

Thank you so much for adding your thoughts and insights as someone who has Lyme Disease. You nailed something I didn’t say with your comment that “There is so much bad information on the internet and even in books by people who feed on fears and not on facts.”

I appreciate everything you said and agree with you wholeheartedly on the mystical/magical overtones that seem to predominate not only Lyme Disease, but all other serious illnesses, instead of facts and knowledge based on hard science and biology. It’s almost like we’re back in the Middle Ages again (and I suppose in many ways, because we’ve abandoned, in large part, reading, learning, and taking responsibility for own lives, including the things that physiologically affect us, we are more than we are aware).

There are many disease processes – Lyme Disease and dementia are two – that are complex and so multirooted in ways that nobody even knows or can understand that will likely never be fully explained or understood. However, I admire you greatly for taking the responsibility in a practical and proactive way to educate and help yourself hopefully live the best life you can in spite of the devastating effects of Lyme Disease.

Again, thank you so much for your comments. That add substantively to the conversation, and I am grateful for them. My thoughts and best wishes also go with you daily as you travel this journey. Stay strong, my friend.

I am encouraged by researchers that seem to be working on unraveling knots on the same rope (gut health, circulation, infectious agents, environmental factors). Hopefully, actionable answers are not as far away as they seem. I believe that particular doctor is attempting to do follow up research.
Misleading FB post titles infuriate me. People read the headline and think one thing but the actual research paper says another. Even when it is good research, the misleading nature of the title discredits it.
The handling of the issues surrounding these diseases by some doctors, boards and agencies combined with the desperate search for answers can easily lead to people looking to Dr. Google…An office that does not differentiate between reliable and unreliable.